A multicentric study of disease-related stress, and perceived vulnerability, in parents of children with congenital cardiac disease

Abstract

Parents of children with congenitally malformed hearts can suffer from stress as a result of the medical condition of their child. In this cross-sectional study, we aimed to describe levels of parental stress, and perceived vulnerability, in parents of children who underwent major cardiac surgery, by using both generic and disease-related measures for assessment. We included parents of children who underwent open-heart surgery over the period 2002 through 2007 in the Center for congenital Anomalies Heart Amsterdam/Leiden, abbreviated to provide the acronym CAHAL. In total, we assessed 114 mothers and 82 fathers of 131 children, using the Pediatric Inventory for Parents, short form, General Health Questionnaire, Parental Stress Index-Short Form, State-Trait Anxiety Index and the Child Vulnerability Scale. Compared to the reference groups of the instruments used, parents of children with congenitally malformed hearts did not report higher generic nor disease-related stress scores, and parenting levels of stress were also comparable to reference groups. State anxiety levels, however, were higher in mothers of children with congenitally malformed hearts. Both fathers and mothers reported significantly higher rates of perceived vulnerability than did parents of healthy children. Risk factors for increased anxiety and perceived vulnerability were found in the number of surgical procedures, the time past since the last procedure, and ethnicity. Severity of the lesion did not influence parental levels of stress, but parents of children with hypoplastic left heart syndrome did report higher levels of stress than other parents. Psychosocial screening of parents of children with congenitally malformed hearts is important in order to provide appropriate counselling to those parents most in need.

Infant deaths in the UK community following successful cardiac surgery: building the evidence base for optimal surveillance, a mixed-methods study

“…The psychological and emotional impact of CHD on parents is well documented [128][129][130][131] and parents' descriptions of their anxiety and symptoms of post-traumatic stress on the online forum corroborate findings in the literature. 132,133 What we were able to additionally elicit, however, were parents' views about the specific challenges they faced following discharge after their child's surgery and their perceptions about what helped mitigate their feelings of isolation and psychological distress.…”

Effect of cardiac surgery in young children with congenital heart disease on parenting stress in central South Africa: Initial outcomes

“…(6)(7)(8)(9) Research findings on parenting stress outcomes in children with CHD are conflicting, with some investigators reporting that parents experienced higher levels of stress, (1,6,7,10,11) whilst others have found stress levels to be similar to those experienced by parents of healthy children; in fact, in some instances parents of children with CHD have even reported lower stress levels than parents of healthy children. It has been suggested that these parents have likely developed a higher threshold for what they perceive to be stressful due to their experiences with their child with CHD.…”

“…It has been suggested that these parents have likely developed a higher threshold for what they perceive to be stressful due to their experiences with their child with CHD. (8,9,11) Research findings suggest considerable variability in individual stress outcomes with disease severity, the changing health status of the child, specific stressors in play at the time and resiliency factors all, in part, explaining the variability. (2,12) In addition, the extent of the burden of care, social isolation and financial difficulties have also been shown to heighten the risk of long-standing psychosocial problems.…”

“…(13) Little is known about the experiences of parents of young children living with CHD. (2,11) Parents of children with CHD face unique challenges that place them at increased risk of psychological distress. These challenges, or stressors, can relate to the child's illness and the child's specific characteristics, as well as to personal and socioeconomic factors.…”

What about the parents? : Sleep quality, mood, saliva cortisol response and sense of coherence in parents with a child admitted to pediatric care

“…Previous studies have reported that parents' stress levels are not associated with the severity of the child's illness, but with their ability to cope with the situation (Mörelius et al, 2002, Vrijmoet-Wiersma et al, 2009, Muscara et al, 2015. Parents with poor SOC might focus on the negative emotions and remain hyperaroused at bedtime, which affects their sleep quality.…”